This is a blog about my journey with Noah and a rare disorder called Schizencephaly.
I share stories of other children, Families, and of course resources for families.
We Are RARE Is a non profit for Children and young adults suffering from a very rare neurological disorders like schizencephaly. Noah is 13 and missing over 40% of his brain .
After a long recovery at Arnold Palmer Noah is being released. I am so glad Noah has been so strong throughout this entire deal. I was so very worried about this all for weeks and once again Noah had kicked Schizencephaly in the butt!
Smiley boy is happy to be heading home after three days of pain and hospital. Mommy is very very happy.
Noah's right hip and right arm surgery took nearly 9 hours to complete, but was a great success
After a year of be insisting on this surgery my fears were confirmed when the Dr got into the hip and found Noah's leg had twisted almost 90degrees. If they had not taken care of this all when we Did there was a great chance his pelvis and lower spine could have began crushing as well as the femur.
Noah is definitely in pain but he Did amazingly and he teaches me more and more how strong willed we can be both mentally and physically. I am just so glad I get to hold him and kiss him more. I was so worried this surgery would be too much for his small body.
Now get is healing up and having some bone broth to build his strength. We should be leaving the hospital tomorrow. We ccanot wait!
Good news, Dr B says since there are three surgeons working at the same time... Two on the hip and one on the wrist they think they can get it done within four hours. That is considering Noah does not have too much damage to the hip socket. Mommy is feeling much better